Open Medicine Foundation (OMF) fundraising

Anybody know if this is an established technique/method? Thanks

 

So far as I am aware the creation of such cultures is a well established thing. I am unsure about brain cells though. Tissue cultures allow a lot more testing, but you do have the risk that the processes used to create them might introduce changes. It really depends on what you have done to them. Immortalising them, for example, can permanently change their nature. Once we have such a culture it can become a test bed for rapid testing of a great many things. This is extremely valuable to rapidly advance the science.

 

Yeah brain cells too. But they would need to get cells from MECFS patients.


First cell culture of live adult human neurons shows potential of brain cell types

https://www.sciencedaily.com/releases/2017/01/170117141149.htm

 

Does anyone know if this is an expensive process, i.e. is this going to take years to do due to its cost?

 

All with barely any institutional funding! In fact against a strong gale of resistance and hip-deep in quicksands of apathy. Although it will take years given this is trying to do the equivalent of $200M per year funding with 1/10 of that in total. Reducing funds always means lengthening the schedule when you can't drop the quality.

In hindsight that's going to be the most impressive fact in this, a problem even harder to solve than figuring out HIV and it will have largely been solved by private funds from sick people and their families. Meanwhile research institutions basically still have their feet up their noses arguing over political nonsense. Stellar work, chumps and chumpettes.

I hope this changes how medical research is funded. The current system is so utterly unable to meet the needs. But you can always count on medicine to never learn any lessons from its own mistakes so I'm not holding my breath.

 

Raeka Aiyar, gave a talk at the Stanford Symposium in September titled "Revolutionizing Disease Research with Stem Cells". It seems a pretty well established technique.
https://www.omf.ngo/community-symposium-3/

 

I would assume the difficulty is in getting MECFS brain cells, not just brain cells per se.

Maybe they could induce MECFS in the cells with Cipro or the anti-cancer compounds that @RDP mentioned in other threads

 

Growing brain cells sounds completely unrealistic. I am not sure why they do not test the trap using MR spectroscopy on the brains of PWME who are ill. If the metabolite is skewed it should show up.

 

From what I understood from watching some ME talks such as Michael VanElzakkers, at present they can only measure a limited number of metabolites with the technology used.

 

Might it not be fruitful to suggest this to the teams. The severely ill are counting the hours until their release.

 

I think the grapevine works quite well here. Most of the things I have posted on S4ME have been picked up on if they make sense.

 

I am glad you seem certain of this Dr Edwards. I find that sometimes researchers (in any field) like to avoid distractions, even if these might be fruitful. I have seen this in my field ever so often. I am not alone to have observed that sometimes one feels there seems to be a lack of urgency (unlike in AIDS or even Cancer). After all, these sick folks are just 'resting', and everyone likes to rest. But as you know this is unrelenting torture. And the thinking is with every input, with every collaboration--things just might move along better.

PS. Let me just add, I know of one researcher who tries very directly to contribute but the big guns are just not giving the time....

 

Merged thread

Dr Ron Davis shares an update on research at the OMF-funded ME/CFS Collaborative Research Center at the Stanford Genome Technology Center. He shares holiday greetings and hope with the entire ME/CFS community.

https://www.youtube.com/watch?v=HJPyshe8TpI

 

Youtube generated transcript

 

My interpretation of this is that you find an interesting result in pilot work that you want to follow up on, submit an NIH grant, but the reviewers say you are not an expert so deny. We know the make-up of ME review panels is pretty bad from Jennie Spotila's blog posts. How do we get out of this?

I now understand better why Colombia and Jackson got the center grants. Jackson has top experts in microbiome and immunology on the project, and Colombia are THE experts in viruses/pathogens

But if you don't have a long term grant, you can't hire the expert to work on it!

 

It is a delicious irony, isn't it? Review panels comprising people who are not experts, or even authorities, on the relevant subject, determining who has relevant expertise.

 

Seems like Chris Armstrong has found some interesting metabolites (time 2.20 to 2.50). Possibly the could make a breakthrough; however, I think Ron said in the past that you pretty much need to have done the work before NIH will fund you to do the work!

 

Thanks for the timestamp. They didn't say who actually found the metabolites not measured before. They did say Chris Armstrong and Laurel Crosby would be working on it, with some assistance from Robert Phair. I assume the first two do the experiments and the last one some pathway simulation or analysis.

I think this is one of the most powerful aspects of the work of this team with funding from OMF. They don't have to wait for a grant to follow-up on a lead, they have the flexibility to get stuck right in. I'm guessing most leads will turn up blank, but one day I'm hoping they or another group hits jackpot.

 

from email

 

https://twitter.com/user/status/1236318704641728512